LEXINGTON, Ky. (Sept. 25, 2020) — Tom Williams spends his days sitting on the front porch, diving deep into a good book. He has always loved to read but never had enough time to fully enjoy it between busy days at work and home - until now. Now, the front porch is his daily destination. It's the furthest he can leave his Lexington home without compromising his fragile health.
A Kentucky native, Williams was diagnosed with idiopathic pulmonary fibrosis (PF) in 2018. At the time, he traveled extensively and was living in Houston when he started to experience shortness of breath. Today, he is on life-saving oxygen 20 hours a day and is awaiting a double-lung transplant.
"My life changed rapidly after the diagnosis," Williams said. "You don't realize how fast it changes you. I started keeping a diary and looking back just over a span of three months, I see how it restricted my lifestyle significantly."
More than 200,000 Americans are living with pulmonary fibrosis, a devastating disease that causes progressive scarring in the lungs. Fifty-thousand new cases of PF are diagnosed each year. Idiopathic pulmonary fibrosis, the most common form of the disease, has no known cause and no known cure. The UK Pulmonary, Critical Care and Sleep Medicine Clinic is a part of the Pulmonary Fibrosis Foundation's (PFF) nationwide Care Center Network and the designation allows UK HealthCare to further advance its patients' care by increasing access to treatment and services.
After moving to Lexington for his wife's job, Williams, the former president of a large research organization, plowed into his own research about PF. "I jumped in with gusto," he said. "I did a lot of digging into my family history and connecting with people who I didn't even know were family. In the end, I didn't find anyone on either side of the family who suffered from this disease."
Though there is no way to know for sure, Williams believes it's possible that his lungs suffered significantly from chemicals and dust he breathed during his work in the oil and gas industry decades ago. While masks are mandatory in Kentucky due to COVID-19, Williams urges those who are exposed to hazardous conditions on the job to mask-up even after the coronavirus pandemic is over. "Maybe, had I worn a mask back then when I was around the nasty chemicals and dust, things would have been different for me today," he said.
One critical aspect of Williams' care includes visits to the UK HealthCare Interstitial Lung Disease Clinic. Dr. James McCormick, a specialist in Pulmonary Critical Care and Sleep Medicine and Williams' doctor, said these clinic appointments are necessary to keep patients on track. "Keeping up with our team is vital to helping patients regain the ability to live their normal day-to-day life and restore their independence," McCormick said.
The clinic offers patients with chronic, advanced lung disease the expert care and multidisciplinary resources they need to reduce symptoms, minimize additional damage and maximize their quality of life.
Williams said the program not only benefited him physically by helping him drop some weight, but it also allowed him to meet others who are fighting the same disease. "You hear their stories and it gives you hope," Williams said. "Most people who go through the transplant process have done very well, so I hope that I have a good chance at a long life on the other side of this."
Waiting for "the call"
Williams is also now among the nearly 1,000 people in Kentucky waiting for life-saving organs. He has been on the transplant list for 15 weeks. He needs two lungs and is working with UKHC's medical director of Lung Transplant, Dr. Maher Baz, to find a match.
The transplant team at UKHC's Transplant Center performs more than 200 transplant surgeries a year. The center's team of cardiothoracic surgeons, pulmonologists, pharmacists and nurses works together to determine the appropriate treatment options for each patient, while social workers and support staff help the patients and their families throughout the transplant process - before, during and after surgery.
Hospitals around the world are adapting care around the COVID-19 pandemic, but transplant surgeries and the need for donors is still just as dire. "The coronavirus pandemic has changed the transplant process in some ways, specifically regarding who can receive a transplant and who is eligible to donate," Baz said. "Our team is very thorough in making sure we find the right match that is safe for all involved."
For Williams, this means the only time he leaves his home is to go to the doctor or UK Chandler Hospital for appointments, though some of his appointments are done via UKHC Telehealth.
"If I get COVID, I figure I'm toast," Williams said. "My wife and I have to go to extreme measures to make sure we do everything possible to avoid it. The only time we go out is to the hospital, and of course, we take precautions there to stay safe."
For now, Williams keeps his phone by his side at all times and holds his breath every time it rings. It's a torturous waiting game.
"You never know when you're going to get the call that could change everything," he said. "Every time the phone rings, you hope it's 'go-time'. It's very nerve-wracking. The things you do every day are geared around getting that phone call."
In the meantime, Williams sticks to his front porch - and that good book.
To learn more about organ donations, visit Donate Life Kentucky
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